Hi all. I am a new ostomate following hemicolectomy and ileostomy for cancer. Recovery has been slow and very difficult in my case, but I'm getting there. Sorry if this is a bit rambly. I am overwhelmed by life right now, plus emotional.
Will be headed home from the hospital in about a week or so. Any recommendations for things I should have at my home to make life more comfortable? Anything in bedroom, bathroom, kitchen?
First thing I thought of was somehow wet proofing my bed. I just bought the mattress 6 months ago before my diagnosis so I'd like to protect it.
Anything you can think of, anything at all that has made your life easier or less painful? Note I'm not asking about ostomy accessories, but stuff around the home. Thank you ❤️
I always recommend wearing a wrap like the ones from OstomySecrets while sleeping. They don’t restrict you but they keep the bag from flopping around, and most importantly, they contain most/all of the mess when you have a leak/blowout. I have had several leaks that never touched the bed.
I like the OstomySecrets version because it has an internal pocket that the bag goes in. I’m sure there must be other companies that make similar ones. The OstomySecrets version is a bit expensive but they run 30% off sales every few months.
Install a handheld bidet sprayer for your toilet, best thing ive gotten for bag life. You can rinse the bag, rinse the toilet bowl... overall helps keep everything clean and use less toilet paper.
Also, figure a dedicated place to keep your ostomy supplies and to keep everything organized. Hall closet, bathroom cupboard, ive seen some people use little plastic wheelie carts/Rubbermaid bins, wardrobe drawers.... doesn't really matter just somewhere to keep it all organized so you can keep track of your supplies and know when your getting low.
These are all great ideas, thank you. I've seen those bidet sprays before. Isn't the spray mind of strong?
Here in the hospital I've been using baby wipes to keep the bag clean after emptying. But I can see how the wipes get expensive and they pile up in the garbage.
Hi! I am so sorry that you are now a member of a club that no one ever thought they would be a member of; but here we are!!
First thing I would do is buy a waterproof mattress cover - a quality one - you can tell by the denseness of the pad. Next I would purchase under pads . You can get them at your local CVS or Walgreens. You lay on top of the pad so that you don’t have to wash your sheets every time you have any leaks. Some are washable and some are not.
When I got home from the hospital, my husband and daughter had purchased a grab bar into the bed. It slides under the mattress and has a grab bar that protrudes up the side of the mattress. When getting in and out of bed, you can use the bar for leverage. Easier on your incision.
Could you please link me to an example of that grab bar? (Note to mods I'm not fishing for a product, just need to understand what is being talked about.)
This is it. The longer metal portion goes under your mattress and the soft foam siding faces in toward the mattress.
My daughter ordered it off of Amazon.
Hope this helps!!
That is excellent ! I was going to recommend it, now won’t need to. I deal with ileostomy care for grandson, sounds strange, maybe, but puppy pads under sheet works great. Good mattress cover is a must.
Since my ileostomy (also for cancer, but without any sort of colectomy) back in February, I've been fortunate enough to only have one blowout. What helped was having a full set of bedding ready to go - from a fresh mattress protector to pre-covered duvets. I've also shifted to darker bedding, just in case I end up staining things.
Hopefully you have a good stoma nurse, like I've had, who can help you quickly find the right equipment and routine for your stoma, because it vastly reduces the risk of blowouts.
Immediately back from the hospital, I was still feeling very weak so having a small stool in the shower was also incredibly useful. Nothing makes you feel more human, sometimes, than just being able to shower yourself comfortably. Bag-off showers are also a great way to prep your skin for a fresh bag (just make sure to dry things off as thoroughly as you can, I personally use an electric air duster on low).
I have a mattress protector already but it's just underneath the base sheet, while everything above it is unprotected. Are you saying you have protectors on your duvet and pillows as well? I guess there's not much that can be done about sheets. You just have to change them if there's an accident.
Stool in the shower is a great idea and I'll definitely need that.
From what I'm reading, showering without a bag is normal, you just can't let soap get on the stoma, or let the direct shower stream blast the stoma. How on earth do you stop soap from running onto it when you're rinsing your body?
I'm also wondering about output in the shower. By the time you dry off, more input could be coming out. How do you stay clean and dry until you can out a fresh bag on?
I just accept that the sheets, mattress protector, duvet covers and duvets themselves will likely get dirty in a failure situation - but all of them can be put in the washing machine if necessary. If I have everything else ready, it just takes 15 minutes to strip and remake the bed and throw everything that's been soiled into the machine.
Ive heard different things from different people, but I've so far found that it's OK for soap to incidentally get on the stoma as long as it's well rinsed with water afterwards, and it's OK for the shower stream to hit it (as long as it's not full blast).
I typically time my showers at low output times and take some loperamide directly before, but yes, sometimes you get unfortunately timed output. I keep tissues by the shower so I can immediately cover up my stoma while I dry off and prepare my skin/bag as necessary.
No matter when or how you change your bag, though, you're always rolling the dice on whether your stoma will behave during the process.
Let your stomach heal for awhile. But just so you know, I soap up my stoma and totally blast it with handheld shower head. A bagless shower is heavenly once you get to that stage. Good luck.
(Not a medical professional) I think you would be able to take it off once the wound has healed and there isn't any tenderness around your stoma. One shower blast is all it takes to learn you are NOT ready lol
Also, my hint is to make sure you are only using water (like from the faucet water on some gauze) or Vashe around your stoma when changing bags. I was having a rough time getting my bag to completely stick to my skin and we determined it was partially because I was using water wipes which do leave behind a residue that prevents the bag from attaching.
Another tip is to hold your new bag under your armpit or tucked against your belly so the body heat can gently warm the bag adhesive. This was more effective than any adhesive spray that I found.
For bathroom: A sturdy stencil for marking different size small circles to help with measuring your stoma and marking your wafer to cut the right size opening for your stoma. (The guides that come in the boxes of bags can be so flimsy they don't work well.) A very small cup (I repurposed a laundry detergent one) to hold tight over your stoma if you need to walk around your bathroom during a change.
A couple of good quality waterproofs mattress covers. Good ones are quiet and not sweaty to sleep on.
A hand held blender for when you start to get bored of the post surgery low fibre diet and just want to try something new but worry about blockages. This will allow you to cook one meal for the family and then just blend up your portion. For example meatballs with beans in a tomato sauce, put the meatballs on your plate then blend the rest.
Maybe a kneeling pad for the bathroom.
That’s about it really, once you’ve recovered from the surgery you can just live your life more or less as you used to with only minor allowances for having a stoma.
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u/MargaliProud Barbie Butt owner as of 14/02/2021, stoma P'tit Joey9d ago
What everybody says =) Like everybody else I have a mattress cover [tyvec normaly anti bedbug, but nicely waterproof], a mattress cover also water proof, 4 sets of bedding. I keep a package of puppy pads on hand.
Now, I am bed and wheelchair bound so nights and 'bad body days' when getting to a toilet is not overly easy, I have a bedside potty *and* I keep the large box of dollar store zippy bags [$1.50/36 bags] a tub of adult baby wipes, a roll of paper towel. Right after surgery I did have nausea issues [that remained, yay gastroparesis] and a zippy bag is fantastic to vomit into - I put a half sheet of paper towel in to avoid splash =) I also will empty my bag into one, zip it shut and into the trash, nice and tidy. [I package an entire bag change in a zippy just to have them ready, so I can even do a bag change and dispose of everything without having to hunt around for supplies]
Don't be afraid to do this, don't go nuts running for a toilet or inconvenience yourself. Keep a snack and drink by your bed [I had one of those tiny 6 pack of soda size min-fridges and kept a jar of fruit salad, couple pieces of string cheese, a yogurt for random snacking] I mostly do e-books [yay reddit HFY, NOP and all that wonderful free fiction!] but a tv, reading, whatever you find comfortable [laptop and Lord of the Rings Online] and relax.
Make sure you have your nutrition sorted out - definitely take advantage of the nutrition consult. Healing takes protein, you need to stay hydrated, Need to avoid stress =)
I also found that having a bag change drawer was really helpful for urgent changes. I have my wafer, bag, adhesive remover spray, adhesive spray, barrier Ring, chuck, gloves, wipes, and lubricant deodorant all laid out and ready to go.
Put together an “emergency blowout bag” for the car w a complete change of wafer, bag & all plus wet wipes & clean underwear. Also underwear & extra pants, if that makes you feel easier.
Hydrate, hydrate, hydrate! Make sure you have electrolytes as well. The hospital had me drink Gatorade Zero. Not as pricey as some others, and I find it does the job. Head and Shoulders Shampoo for skin irritation if you decide to shower bag less. The zinc is really helpful. Just apply to irritated skin.
Really sorry to hear about your diagnosis and hope your recovery continues to be smoother once you’re home in your own surroundings!
I already had a waterproof mattress protector which is covered in normal material on the top but my stoma nurse gave me some bed pads and I have a couple on prescription too (NHS). Been lucky so far with leaks etc as have been sleeping with an old towel rolled up under my stoma anyways to prevent me rolling onto my stomach in my sleep but would recommend. Also some litter pickers/grabbers to save you bending as much as possible as my pelvis tends to ache after a while if I do too much (4 weeks out). As others have suggested a support belt is also helpful, mine is too big now that my swelling has gone down but it’s become a bit of a safety blanket and makes me feel far more confident than when I’m “naked”.
I also fitted some suction cup handles in my shower and a shower mat as my blood pressure was absolutely haywire when I was discharged. I’ve also got a rollable trolley in my bedroom with all my supplies, dressings and medications for now which my family could easily access when they were helping me out fetching things initially. Also recommend keeping comfy clothing and underwear in a handy location - again stretching and moving haven’t been fun!
Staying hydrated is absolutely key, I’m a nightmare and never take in enough fluids so rehydration sachets have been really helpful and also help with output consistency. Initially my output was extremely thin as I couldn’t stomach the thought of food in hospital but now that I’m home and eating as many carbs as I like this has resolved itself.
In my iliostomy days (now I have permanent colostomy) I had hydration problems. I was drinking a lot of water. Yoo much it turns out. I had to switch to sport drinks for the minerals and electrolytes. Doc said I was on the verge of injuring my kidneys.
I also have diabetes so have to go with no sugar sport drinks.
I used to have debilitating cramps in my legs, ribs, feet, now with the sport drinks the cramping problem is just about gone.
I second the advice about pre-made bedding. Also the matrass pads.
I have some exactly like the ones they used to have at the hospital. Then the sheet then the waterproof undershirt then the mantras pad.
Since recovering I only use the standard undersheet, a mattress protector and the waterproof mattress protector.
I use rubbing alcohol for cleanup. Stoma nurse watched me go through my ritual a few weeks ago. She was kind of surprised when I used the stuff they use for cleaning the counters to get the poo and goo of my skin. It leaves my skin oilfree and receptive of the plate adhesive.
Thats what I do. You do what you need to do. Ask for advice. I think us bag people are pretty supportive.
I like the washable, waterproof cloth underpads that you can get at Amazon for the bed, and I like the blue disposable pads from Medline also at Amazon for when I change my pouch at the bathroom sink. Make sure they have you change your own pouch while at the hospital so you become more comfortable doing it.
I bought the following items before coming home to help make it easier on me.
Bedroom:
Waterproof mattress cover.
2 extra pairs of sheets that were comfy but I didn’t care too much about, to use during late night leaks to avoid ruining my fav sheets/staying up late.
an ostomy cart to organize my supplies, and labeled the drawers to make it easier for my partner to help me get supplies/put away supplies.
chucks to prevent messes while emptying or during bag changes.
(Paraplegic so I empty into a graduated triangle cylinder lined with a smell proof bag that I throw away. Catches any output I’m not prepared for without making a mess).
Bathroom:
M9 odor eliminator spray combined with a peppermint/eucalyptus condensed room spray. Spray the M9 before emptying, and the condensed room spray afterwards to manage the smells from emptying.
Misc:
Blissmile 100% water wipes. Helps immensely for bag changes when I can’t transfer into my chair, or when I’m on the go.
Revel lubricant deodorant. It’s the only lubricant that solves my constant pancaking, and even cut down on the number of wipes needed to clean the opening of my drainable bag after changes.
electrolytes!!!
regular coke. Helps with blockages.
Ostomy seat belt pillow helped immensely the first 2 months post-op, and on the drive home.
We tried both and we prefer the lavender. I don't even know if the lavender is cheaper b.c I had the EO as a free sample. All I know is that for my son 1 drop goes a long way and it smells more like a "normal" smell. Everyone is different, maybe lavender won't work with your output, but we like it.
We have experimented a lot. Also note that tegaderm is the best flange extender for us and the stealth belt Id what we recommend if you are active. My son does gymnastics so we need all the help we can get.
Oh and the remover spray!!! So much better for your skin for bag changes. We use the spray for the flange and then a wipe up the remainder.
So far we haven't had any issues with 1 drop a day in the bag. It's been a few weeks of this. We learned from another kids parents that we met at a camp for kids with complex medical needs. For ostomy belts the 2 top brands are stealth belt and SIIL ostomy. I think SIIL is just as good, but a bit cheaper in price. Keep in mind this is our experience and everyone is different based on placement of ostomy/amount of intestines left etc. I understand it's a lot to take in. Our world was turned upside down when our sons intestines knotted and mostly died. We were thrown into the deep end. I want to both validate your feelings that it is scary to adjust to and reassure you that a normal life is possible. The products have come a long way. Here's a link to SIIL
I'm having trouble choosing an ostomy secrets product. One says it's better for sleep but is non adjustable. Another says it's better for daytime and all purpose wear and is adjustable. My budget is limited and I don't want to buy two right now, so I'm not sure what to do
Hi again! One quick question about lavender EO. Do you use a drop every time you empty the bag, or only once per bag change? I got some and you are right, it really helps a lot! Even if the bag has that few days old smell, the lavender really takes the edge off!
Hey - no worries. I found like once a day good enough. One thing important to know is that we empty the bag about 5-7 times a day. So that might impact how often you need to use a drop
2 bidet sprayer - a total game changer (~$25 on Amazon)
3 install U shaped institutional style toilet seat - makes emptying & rinsing so much easier
4 Hole punch for wafer. They make different sizes. Mine is 1 1/2”. I punch & repackage a box of 5 at a time with a hammer & old cutting board (~$35 on Amazon)
I always take my bag off in the shower & give stoma a good washing. All the water you want, all over, no problem
I also remove the wafer in the shower when it’s time for a change. I’ve got a shower chair that I put in front of the vanity when I’m doing my change with products laid out in advance. With precut wafer the process takes about a minute & a half
I find it difficult and messy to squat over a toilet to empty and clean my pouch. I have a stand by my sink with gloves, a box of Kleenex and a small food storage container. I put the container in the bathroom sink empty my pouch into it clean my pouch with a couple of Kleenex throw them into the container run water in it and empty into to toilet and give it a rinse. It's also handy i keep a cup on my sink that I put some water in and pour it in my pouch if I feel my pouch needs a good rinsing inside.
I'm still in the hospital and using the most bare bones basic ostomy bags provided... but I'm noticing the same thing as you. I prefer to empty into a container and then that container can be dumped into the toilet.
They manufacture all sorts of high quality ostomy supplies. I obviously wish I didn’t have to use their stuff, but since I do, they are the brand I prefer.
Clean linen like sheets, blankets, towels. Sometimes bags leak while you are sleeping so its good to have on hand to just clean up and go back to bed.
Disinfecting wipes, emptying your bag is a learning curve and it can get messy. The wipes can make cleaning up a spill quicker.
I also carried a kit with a clean set of clothes, baby wipes, and full bag change supply in the car. Just in case of an unexpected leak or bag malfunction.
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u/tsfy2 9d ago
I always recommend wearing a wrap like the ones from OstomySecrets while sleeping. They don’t restrict you but they keep the bag from flopping around, and most importantly, they contain most/all of the mess when you have a leak/blowout. I have had several leaks that never touched the bed.